The United Network for Organ Sharing (UNOS) is the nonprofit organization that contracts with the federal government to distribute donated organs (e.g., livers, hearts, lungs, kidneys, and pancreases) throughout the country. UNOS coordinated a total of 39,718 transplants in 2019. In 2018, I received a transplanted organ.
A Surprise Diagnosis
I was a third-year attorney when I was diagnosed with end-stage liver disease. I found out after applying for a life insurance policy that required blood work. The insurance agent called to say that I was denied coverage and I needed to see a doctor in the next 24 hours because my liver enzyme readings were nine times higher than normal. Although I had been feeling the effects, I chalked it up to a high-stress job and getting less than an ideal amount of sleep. One hospital stay and several tests later, the doctors diagnosed me with primary sclerosing cholangitis, a progressive autoimmune disease that causes the liver’s bile ducts to close. Six months later, the transplant evaluation process began.
The Transplant Evaluation Process
The evaluation process ensures a patient is capable of physically, mentally, and financially undergoing the procedure and confirms an adequate support system. During my weeklong evaluation, I underwent numerous tests to check that I was otherwise healthy. Counselors checked my mental health and evaluated whether my lifestyle would interfere with a successful transplant. A financial specialist analyzed my insurance coverage for both the surgery and the eight new medications I would need afterward. My wife and I attended several classes on what to expect during my recovery.
Everything I Thought I Knew about the Transplant Process Was Wrong
Most surprisingly: the waiting list is not time-based; it is need-based. Each person waiting for a liver transplant receives a score under the model for end-stage liver disease (MELD), which is meant to measure how close the liver is to failing. Every eight weeks, I had lab work done and updated my MELD score. UNOS distributes an available liver to the highest-scoring person in the area who has the correct physical characteristics (e.g., blood type).
Additionally, patients do not get much notice—while active on the waiting list, I could not travel far from my hospital. When my time came, I would need to arrive within six hours of receiving the phone call. Because I lived within 15 miles of the hospital, I was also on the backup call list. After surgery, I would be out of work for 8 to 12 weeks. I informed my bosses that I would be unavailable for work for three months, but I would not find out when that started until the day of surgery.
The Day the Call Came
The call came at 7 a.m. on a Wednesday as I was getting ready for a hearing in a federal class action. I did not get the expected six hours to arrive. Instead, I had 75 minutes to get to the hospital as I was the backup call. Three hours after the call, I went into the operating room.
The surgery was successful, and five days later, I left the hospital with a new liver and no longer had any of my liver disease symptoms. It has been almost two years since my surgery, and I have gotten back to the lifestyle that my disease took from me, including running three half-marathons and my first full marathon in nine years. While a high-stress lifestyle alone did not cause my symptoms, I used the experience as a springboard to cut back on stress and improve my work-life balance.